Assessing the Accuracy of Inflammatory Breast Cancer Self-Reported Diagnoses through the Metastatic Breast Cancer Project from the Count Me In Initiative Database

Assessing the Accuracy of Inflammatory Breast Cancer Self-Reported Diagnoses through the Metastatic Breast Cancer Project from the Count Me In Initiative Database | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Assessing the Accuracy of Inflammatory Breast Cancer Self-Reported Diagnoses through the Metastatic Breast Cancer Project from the Count Me In Initiative Database Pietro Placido, Elizabeth Troll, Samuel M. Niman, Sean Ryan, Ginny Mason, and 9 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-7625939/v1 This work is licensed under a CC BY 4.0 License Status: Published Journal Publication published 24 Dec, 2025 Read the published version in Breast Cancer Research and Treatment → Version 1 posted 7 You are reading this latest preprint version Abstract Purpose This study assessed the accuracy of self-reported inflammatory breast cancer (IBC) diagnoses within the Count Me In (CMI) Metastatic Breast Cancer Project. Given IBC’s aggressive nature and diagnostic complexity, we aimed to evaluate the reliability of patient-reported data by quantifying concordance rates between self-reported and clinically confirmed diagnoses. Methods Medical records from 79 patients who self-identified as having IBC were reviewed to confirm the diagnosis through provider documentation. When explicit confirmation was absent, a recently validated quantitative IBC scoring system was applied. Each patient’s diagnosis was adjudicated by an expert physician, with cases classified as concordant or discordant based on predefined criteria. A concordance threshold of 90% was established to consider patient-reported diagnoses as sufficiently reliable. Results Among the 79 patients, 57/79 (72.2%) had concordant diagnoses based on either explicit documentation or scoring system verification. Specifically, 51/79 (64.6%) had explicit documentation, while an additional 6/79 (7.6%) met scoring system criteria. However, 22/79 (27.8%) were discordant, either lacking evidence or unable to be confirmed due to incomplete medical records, falling below the 90% concordance threshold required for reliability. Conclusion Although patient self-reporting via the CMI initiative allows rapid data collection, reliance solely on self-identification for diagnosing IBC may lead to misclassification. Future strategies should incorporate refined symptom-specific screening and prioritize enrolling patients with stage III IBC. Advanced technologies such as AI-assisted medical record analysis could further enhance diagnostic accuracy and facilitate high-quality data collection for improved diagnosis and outcomes. Inflammatory Breast Cancer Metastatic Breast Cancer Registry Validation Patient-reported Outcomes Diagnostic Accuracy Figures Figure 1 Figure 2 INTRODUCTION Inflammatory breast cancer (IBC) represents one of the most aggressive forms of breast carcinoma, accounting for ~ 4% of all breast cancer cases [ 1 ]. Despite its rarity, IBC carries disproportionately high morbidity, being characterized by rapid progression, distinct clinical features, and poor oncologic outcomes [ 2 ]. IBC diagnosis typically relies on clinical identification of hallmark symptoms such as skin erythema, skin edema (peau d’orange) and unilateral breast enlargement, alongside pathological confirmation of invasive carcinoma, necessitating prompt diagnosis to initiate timely treatment [ 3 ]. Historically, IBC has been associated with notably lower survival rates compared to non-IBC due to its aggressive nature and the frequent presence of metastatic disease at diagnosis [ 4 , 5 ]. Despite improvements in clinical outcomes in recent years with the introduction of novel systemic therapies, adherence to evidence-based management strategies in IBC remains limited, and robust data from IBC-specific clinical trials are lacking [ 6 , 7 ]. Furthermore, progress in elucidating the biological and clinical heterogeneity of IBC has been slow, and a definitive oncogenic driver or unifying pathogenic mechanism has yet to be identified [ 8 ]. Misclassification can also significantly impact locoregional treatment decisions and enrollment in appropriate IBC registries and clinical trials, emphasizing the need for heightened awareness and rigorous diagnostic criteria [ 9 – 11 ]. To address this, Susan G. Komen, the IBC Research Foundation, and the Milburn Foundation convened a panel of patient advocates, clinicians, and researchers with expertise in IBC to develop a new diagnostic scoring system. This proposed system was recently validated using a large, multi-institutional clinical dataset [ 12 ]. Given these complexities, innovative approaches are urgently needed to improve IBC outcomes. The Count Me In (CMI) initiative, a nonprofit research initiative across the United States and Canada, was designed to engage patients directly in research through self-reported data, representing a novel approach to addressing gaps in cancer research. CMI leverages patient-reported data and biospecimen contributions to build longitudinal research cohorts, empowering patients to contribute directly to scientific discovery. The Metastatic Breast Cancer (MBC) Project, one of CMI’s flagship efforts, is a prospective longitudinal cohort demonstrating the feasibility of engaging patients with advanced breast cancer and fostering collaborations between researchers, clinicians, and patients​​. By integrating patient-reported outcomes (PRO) with clinical data, CMI has the potential to unravel new insights into IBC’s clinical and biological trajectory, driving forward personalized medicine in this domain. However, the reliance on self-reported diagnoses presents inherent limitations, particularly in diseases with complex diagnostic criteria such as IBC. In this context, confirming patient-reported data is critical to ensuring the validity and generalizability of findings derived from these cohorts​​. This study assesses the accuracy of self-reported IBC diagnoses within the CMI MBC Project cohort. We aim to quantify concordance rates between self-reported and clinically confirmed diagnoses by reviewing medical records and applying a validated quantitative scoring system [ 13 ]. By doing so, it seeks to establish the validity of patient-reported data as a complementary tool for IBC research. This work highlights the potential of patient-centered research networks while addressing critical areas for improvement. METHODS Patients eligible for this study had self-identified as having IBC while enrolled in the CMI MBC Project cohort. By participating in CMI, all participants gave appropriate consent to allow investigators to retrieve and review their medical records. Once the records were obtained, each case underwent a systematic evaluation to confirm whether a healthcare provider documented a formal IBC diagnosis in electronic medical records. The documentation included visit notes stating “inflammatory breast cancer”, “IBC” or as determined by direct interpretation of physician progress notes, pathology reports, and imaging reports, if available, by the Principal Investigator (FL). Where the medical records did not explicitly confirm a diagnosis of IBC by a provider, the patient’s self-reported diagnosis was evaluated using a novel IBC scoring system [ 13 ], which was recently validated. This scoring system leverages key clinical features characteristic of IBC, such as rapid onset of breast symptoms and skin changes, the presence of skin erythema, nipple abnormalities, dermal lymphatic tumor emboli and suggestive breast imaging to confirm the diagnosis. Scores derived from these symptoms, when multiplied by a priority factor, establish the likelihood of an IBC diagnosis based on provisional cutoffs from pilot data, indicating whether the patient’s presentation is highly suggestive of IBC. A physician (FL) and research coordinator (ET), experienced in IBC diagnosis and management, independently reviewed each case. During this adjudication step, the physician confirmed or refuted the presence of IBC based on both the original provider documentation and the results of the IBC scoring system. Decisions were made by referring to standard clinical diagnostic criteria for IBC. Each medical record was classified as either “concordant” or “discordant”. A concordant designation indicated that the electronic medical record review (including the IBC scoring system assessment, if required) confirmed the participant’s self-reported IBC diagnosis. In contrast, records classified as discordant were those in which either a provider documented no formal diagnosis and the IBC scoring system did not meet the threshold indicating an IBC diagnosis or in which the physician adjudication disagreed with the self-reported status despite the scoring system results. Before conducting this study, we determined that the rate of concordant cases would need to be at least 90% to conclude that self-identification provided a sufficiently homogeneous population of patients with IBC. If the concordant diagnostic rate fell below the predetermined range of 80–85%, self-reported diagnoses of IBC would be classified under the acceptability to ensure that patient self-report captures IBC diagnosis. The study was conducted under the standards of "Good Clinical Practice" (GCP) (ICH 1996), under the Declaration of Helsinki (World Medical Association 1996 and its amendments) and the current regulations. The study protocol was approved by the Institutional Review Board of Dana-Farber Cancer Institute (IRB#15-057b) as required by laws in force. Informed consent was obtained from all individuals included in the study as required by the Count Me In participation. Data Availability The clinically annotated genomic dataset of the MBC Project is shared publicly in order for all researchers to be able to utilize this data to better understand metastatic breast cancer. De-identified data has been shared on a recurring basis as the data is generated. Data from The Metastatic Breast Cancer Project is available at cBioPortal with (N = 379 tumor, 301 patients) ( https://www.cbioportal.org/study/summary?id=brca_mbcproject_2022 ), National Cancer Institute's Genomic Data Commons ( https://portal.gdc.cancer.gov/projects/CMI-MBC ) and dbGaP (Study Accession phs001709). As of February 2025, the Genomic Data Commons and dbGaP data repositories have been updated with the genomic data for all the tumor samples collected for the MBC Project. RESULTS From January 2014 to February 2025, a total of 79 participants in the MBC Project self-identified as having IBC and had medical records available for review (reasons for exclusion are listed in Fig. 1 ). Patient demographic characteristics are represented in Table 1 . The median age was 47 years (range, 29–65), with the majority of participants identifying as White (67/79, 84.8%). Representation from other racial and ethnic groups was limited, with a small number of participants identifying as Black (n = 6), Hispanic (n = 1), Asian (n = 1), Native Hawaiian (n = 1), Other (n = 2), and unspecified race/ethnicity (n = 1). Overall, 51/79 patients (64.6%) had documentation of an IBC diagnosis explicitly stated in their medical records by a healthcare provider. For the remaining 28 patients (35.4%) without chart-documented IBC, further assessment was performed using a validated IBC scoring system and physician adjudication. Among those, 6/28 (21.4%; 7.6% of total cohort) met diagnostic criteria for IBC through the IBC scoring system based on symptoms, signs, imaging and pathology reports extracted from the available records (Table 2 ). For 16/28 patients (57.1%; 20.2% of the total cohort), there was no evidence supporting an IBC diagnosis based on the available documentation. In 6/28 patients (21.4%; 7.6% of the total cohort), a final diagnostic assessment could not be made due to a lack of medical records at the time of initial diagnosis (Fig. 2 ). Combining all confirmed diagnoses, either by documentation in provider notes or by the scoring system, 57/79 patients (72.2%; 95% CI 61–82%) were classified as having a concordant IBC diagnosis. The concordance rate fell below the pre-specified 90% threshold required to consider self-reporting sufficiently reliable for identifying IBC cases. Table 1 Patients demographics Race Number of patients Median Age (Range) Total 79 47 (29–65) White 67 47 (29–65) Black 6 48 (41–49) Asian 1 44 Native Hawaiian 1 43 Other 2 49 (39–59) N/A 2 48 (30–58) Table 2 IBC Scoring System Calculation Komen Score 1183 Symptom Score Priority Factor Value Conclusion Timing 3 3 9 Skin changes 3 3 9 Swelling/enlargement 3 3 9 Erythema 0 2 0 Nipple Abnormalities 0 2 0 Breast Imaging 3 1 3 Pathology 0 2 0 30 strong possibility of IBC Komen Score 3636 Symptom Score Priority Factor Value Conclusion Timing 3 3 9 Skin changes 0 3 0 Swelling/enlargement 0 3 0 Erythema 3 2 6 Nipple Abnormalities 0 2 0 Breast Imaging 0 1 0 Pathology 0 2 0 15 weak possibility of IBC Komen Score 6405 Symptom Score Priority Factor Value Conclusion Timing 3 3 9 Skin changes 2 3 6 Swelling/enlargement 3 3 9 Erythema 2 2 6 Nipple Abnormalities 0 2 0 Breast Imaging 0 1 0 Pathology 0 2 0 30 strong possibility of IBC Komen Score 6788 Symptom Score Priority Factor Value Conclusion Timing 3 3 9 Skin changes 0 3 0 Swelling/enlargement 3 3 9 Erythema 2 2 4 Nipple Abnormalities 3 2 6 Breast Imaging 0 1 0 Pathology 0 2 0 28 strong possibility of IBC Komen Score 7207 Symptom Score Priority Factor Value Conclusion Timing 3 3 9 Skin changes 0 3 0 Swelling/enlargement 1 3 3 Erythema 2 2 4 Nipple Abnormalities 0 2 0 Breast Imaging 0 1 0 Pathology 0 2 0 16 weak possibility of IBC DISCUSSION In this study, we observed a 72.2% concordance rate between self-reported IBC diagnoses and those confirmed through medical records or a validated IBC scoring system. While this rate demonstrates that patient-reported data can be very valuable, it remained below the pre-specified threshold of 90% which we considered to be optimally rigorous for research purposes, indicating a need for enhanced validation strategies when using registry data for IBC. These findings highlight that while self-reported diagnosis via CMI contributes to rapid cohort accrual, and using patient contribution facilitates access to research in rare breast cancer subtypes, reliance on self-identification alone can lead to misclassification. However, it is worth noting that in this cohort, 7.6% of self-reported IBC cases were unverifiable due to limited medical records. It’s interesting to note that recalculating the concordance, only accounting for patients with adequate medical records, and so excluding those with a lack of medical records, the concordance rate goes up to 78.1%, still being under the pre-determined threshold of acceptability. Given the complexities in accurately diagnosing IBC, the critical unmet need for universally accepted and standardized diagnostic criteria appears evident. This underscores the need for refined eligibility screening in future efforts, including incorporating symptom-specific questions (e.g., skin changes, symptom onset timing) to capture the disease characteristics. This might increase the identification rate of a rare condition and ensure the collection of accurate and reliable clinical information in optimal registry studies [ 14 ]. Enhanced patient participation in research facilitates detailed characterization of rare diseases, helping to define their natural history, optimize early diagnosis, and guide clinical decision-making. The CMI initiative exemplifies patient empowerment in research participation, providing a unique platform that overcomes geographical, institutional, and socioeconomic barriers by engaging patients directly online ( https://joincountmein.org/ ). These inclusive approaches (like CART-WHEEL.org, EURACAN, Orphanet) enable large-scale collection of valuable clinical, genomic, and patient-reported data, particularly impactful for rare cancers where traditional clinical trials are challenging due to limited patient numbers​ [ 15 – 17 ]. However, despite these advantages, limitations inherent to patient-generated data, such as variable accuracy and understanding of clinical data reporting by patients, suggest using structured validation methods to reinforce data integrity​ [ 18 ]. IBC diagnosis often suffers from clinical ambiguity due to heterogeneous presentation and overlapping features with non-inflammatory locally advanced breast cancers. Unclear diagnostic features frequently contribute to misclassification, either under- or over-reporting IBC cases. Recently, a quantitative scoring system has been proposed as a step toward standardized diagnostic criteria for IBC, aiming to integrate clinical, pathological, and imaging features into a more objective framework [ 13 ]. This scoring system was developed by assigning numerical values based on specific characteristics, facilitating categorization and potentially reducing diagnostic variability​. A recent validation study tested the scoring system for diagnosing IBC using a photograph-rich dataset from nearly 1,000 IBC cases collected by specialized clinics. Results indicated that the scoring system accurately identified most IBC cases, demonstrating strong potential to reduce misdiagnoses. However, specificity was limited, suggesting room for improvement to reduce false positives [ 12 ]. A limitation of this study is that the analysis was limited to patients with metastatic IBC. This may have contributed to the observed discordance, as some patients may have presented with skin metastases rather than primary inflammatory skin changes typical of IBC. Another limitation concerns the accuracy and completeness of medical records. Although they represent the most reliable source of patient history in retrospective chart reviews, medical records may lack specific details relevant to the research question, introducing potential misclassification. Future studies should focus on stage III IBC patients to improve diagnostic accuracy and incorporate structured electronic case report forms (eCRFs), or at least registry questions specifically designed to capture all relevant clinical variables, ensuring comprehensive and reliable data collection. Technological efforts have also advanced to improve provider recognition of IBC symptoms. An accessible online tool ( https://www.komen.org/ibc-calc ) based on the validated scoring system was developed. This tool helps healthcare providers and patients collaboratively assess symptoms and make informed decisions about possible IBC diagnosis and subsequent management. Such educational initiatives aim to increase awareness of IBC among providers and patients, enabling earlier diagnosis and prompt treatment administration. CONCLUSIONS To improve IBC identification, patient questionnaires in registry initiatives should include clear questions about specific symptoms, such as skin changes and the timing of symptom onset. Refining these questionnaires could help more accurately identify potential IBC cases earlier and reduce diagnostic uncertainty. Additionally, future registries may prioritize recruiting stage III IBC patients to enhance diagnostic accuracy due to better availability of clinical information and clearer documentation. The inclusion of advanced technological tools, like AI-assisted chart reviews or automated image analysis, could also greatly assist in reliably identifying IBC cases at a larger scale. These technologies could simplify the validation of diagnostic criteria and improve overall research efficiency. Finally, building cohorts of patients with confirmed and highly accurate diagnoses is crucial. Such high-confidence cohorts will significantly aid biomarker discovery, help design more effective clinical studies and generate reliable real-world data. These collective efforts might improve clinical management and lead to better outcomes for IBC patients. Declarations Acknowledgments and Funding Information Pietro De Placido performed this research as part of the research activities as a PNRR “Fit4MedRob” - RTD-A -Department of Advanced Biomedical Sciences. Author Contribution All authors contributed to the study conception and design. Material preparation, data collection, and analysis were performed by Filipa Lynce, Elizabeth Troll, Meredith Regan, and Samuel Niman. The first draft of the manuscript was written by Pietro De Placido and Filipa Lynce and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript. Data Availability The clinically annotated genomic dataset of the MBC Project is shared publicly in order for all researchers to be able to utilize this data to better understand metastatic breast cancer. De-identified data has been shared on a recurring basis as the data is generated. Data from The Metastatic Breast Cancer Project is available at cBioPortal with (N=379 tumor, 301 patients) (https://www.cbioportal.org/study/summary?id=brca_mbcproject_2022), National Cancer Institute's Genomic Data Commons (https://portal.gdc.cancer.gov/projects/CMI-MBC) and dbGaP (Study Accession phs001709). 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Cite Share Download PDF Status: Published Journal Publication published 24 Dec, 2025 Read the published version in Breast Cancer Research and Treatment → Version 1 posted Editorial decision: Revision requested 08 Nov, 2025 Reviews received at journal 20 Oct, 2025 Reviewers agreed at journal 09 Oct, 2025 Reviewers invited by journal 07 Oct, 2025 Editor assigned by journal 16 Sep, 2025 Submission checks completed at journal 16 Sep, 2025 First submitted to journal 16 Sep, 2025 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. 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01:20:35","extension":"html","order_by":11,"title":"","display":"","copyAsset":false,"role":"acdc-reference","size":98182,"visible":true,"origin":"","legend":"","description":"","filename":"earlyproof.html","url":"https://assets-eu.researchsquare.com/files/rs-7625939/v1/b1280de27cfde6bac1cf9484.html"},{"id":93976563,"identity":"9358f01a-e088-4382-a5bb-215bd8b8cdf4","added_by":"auto","created_at":"2025-10-21 01:20:35","extension":"png","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":60191,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cstrong\u003eConsort Diagram for the Study Population\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe diagram shows the number of patients included in the study and the reasons for concordance attribution.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAbbreviations: MBC Project:\u003c/strong\u003e Metastatic Breast Cancer Project; \u003cstrong\u003eIBC:\u003c/strong\u003einflammatory breast cancer\u003c/p\u003e","description":"","filename":"Onlinefloatimage1.png","url":"https://assets-eu.researchsquare.com/files/rs-7625939/v1/72c80d11cb836f61bb8a0408.png"},{"id":93976562,"identity":"f5fd9a36-e4c4-4b29-8d65-15cf2ccb34b1","added_by":"auto","created_at":"2025-10-21 01:20:35","extension":"png","order_by":2,"title":"Figure 2","display":"","copyAsset":false,"role":"figure","size":46746,"visible":true,"origin":"","legend":"\u003cp\u003ePie-Chart showing the concordance of the IBC cases by self- and physician adjudication\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAbbreviations: IBC:\u003c/strong\u003e inflammatory breast cancer\u003c/p\u003e","description":"","filename":"Onlinefloatimage3.png","url":"https://assets-eu.researchsquare.com/files/rs-7625939/v1/3f3aecde5e1ca5b4bc4e5d1e.png"},{"id":99172224,"identity":"8ec56ec7-8260-41f5-b706-80e33639592f","added_by":"auto","created_at":"2025-12-29 16:04:07","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":853935,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-7625939/v1/21e7da6b-c40e-4aaf-925b-fb551a9596b8.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"Assessing the Accuracy of Inflammatory Breast Cancer Self-Reported Diagnoses through the Metastatic Breast Cancer Project from the Count Me In Initiative Database","fulltext":[{"header":"INTRODUCTION","content":"\u003cp\u003eInflammatory breast cancer (IBC) represents one of the most aggressive forms of breast carcinoma, accounting for ~\u0026thinsp;4% of all breast cancer cases [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e]. Despite its rarity, IBC carries disproportionately high morbidity, being characterized by rapid progression, distinct clinical features, and poor oncologic outcomes [\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e]. IBC diagnosis typically relies on clinical identification of hallmark symptoms such as skin erythema, skin edema (peau d\u0026rsquo;orange) and unilateral breast enlargement, alongside pathological confirmation of invasive carcinoma, necessitating prompt diagnosis to initiate timely treatment [\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e].\u003c/p\u003e\u003cp\u003eHistorically, IBC has been associated with notably lower survival rates compared to non-IBC due to its aggressive nature and the frequent presence of metastatic disease at diagnosis [\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e, \u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e]. Despite improvements in clinical outcomes in recent years with the introduction of novel systemic therapies, adherence to evidence-based management strategies in IBC remains limited, and robust data from IBC-specific clinical trials are lacking [\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e, \u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e]. Furthermore, progress in elucidating the biological and clinical heterogeneity of IBC has been slow, and a definitive oncogenic driver or unifying pathogenic mechanism has yet to be identified [\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e]. Misclassification can also significantly impact locoregional treatment decisions and enrollment in appropriate IBC registries and clinical trials, emphasizing the need for heightened awareness and rigorous diagnostic criteria [\u003cspan additionalcitationids=\"CR10\" citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e]. To address this, Susan G. Komen, the IBC Research Foundation, and the Milburn Foundation convened a panel of patient advocates, clinicians, and researchers with expertise in IBC to develop a new diagnostic scoring system. This proposed system was recently validated using a large, multi-institutional clinical dataset [\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e].\u003c/p\u003e\u003cp\u003eGiven these complexities, innovative approaches are urgently needed to improve IBC outcomes. The Count Me In (CMI) initiative, a nonprofit research initiative across the United States and Canada, was designed to engage patients directly in research through self-reported data, representing a novel approach to addressing gaps in cancer research. CMI leverages patient-reported data and biospecimen contributions to build longitudinal research cohorts, empowering patients to contribute directly to scientific discovery. The Metastatic Breast Cancer (MBC) Project, one of CMI\u0026rsquo;s flagship efforts, is a prospective longitudinal cohort demonstrating the feasibility of engaging patients with advanced breast cancer and fostering collaborations between researchers, clinicians, and patients​​. By integrating patient-reported outcomes (PRO) with clinical data, CMI has the potential to unravel new insights into IBC\u0026rsquo;s clinical and biological trajectory, driving forward personalized medicine in this domain. However, the reliance on self-reported diagnoses presents inherent limitations, particularly in diseases with complex diagnostic criteria such as IBC. In this context, confirming patient-reported data is critical to ensuring the validity and generalizability of findings derived from these cohorts​​.\u003c/p\u003e\u003cp\u003eThis study assesses the accuracy of self-reported IBC diagnoses within the CMI MBC Project cohort. We aim to quantify concordance rates between self-reported and clinically confirmed diagnoses by reviewing medical records and applying a validated quantitative scoring system [\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e]. By doing so, it seeks to establish the validity of patient-reported data as a complementary tool for IBC research. This work highlights the potential of patient-centered research networks while addressing critical areas for improvement.\u003c/p\u003e"},{"header":"METHODS","content":"\u003cp\u003ePatients eligible for this study had self-identified as having IBC while enrolled in the CMI MBC Project cohort. By participating in CMI, all participants gave appropriate consent to allow investigators to retrieve and review their medical records. Once the records were obtained, each case underwent a systematic evaluation to confirm whether a healthcare provider documented a formal IBC diagnosis in electronic medical records. The documentation included visit notes stating \u0026ldquo;inflammatory breast cancer\u0026rdquo;, \u0026ldquo;IBC\u0026rdquo; or as determined by direct interpretation of physician progress notes, pathology reports, and imaging reports, if available, by the Principal Investigator (FL).\u003c/p\u003e\u003cp\u003eWhere the medical records did not explicitly confirm a diagnosis of IBC by a provider, the patient\u0026rsquo;s self-reported diagnosis was evaluated using a novel IBC scoring system [\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e], which was recently validated. This scoring system leverages key clinical features characteristic of IBC, such as rapid onset of breast symptoms and skin changes, the presence of skin erythema, nipple abnormalities, dermal lymphatic tumor emboli and suggestive breast imaging to confirm the diagnosis. Scores derived from these symptoms, when multiplied by a priority factor, establish the likelihood of an IBC diagnosis based on provisional cutoffs from pilot data, indicating whether the patient\u0026rsquo;s presentation is highly suggestive of IBC.\u003c/p\u003e\u003cp\u003eA physician (FL) and research coordinator (ET), experienced in IBC diagnosis and management, independently reviewed each case. During this adjudication step, the physician confirmed or refuted the presence of IBC based on both the original provider documentation and the results of the IBC scoring system. Decisions were made by referring to standard clinical diagnostic criteria for IBC.\u003c/p\u003e\u003cp\u003eEach medical record was classified as either \u0026ldquo;concordant\u0026rdquo; or \u0026ldquo;discordant\u0026rdquo;. A concordant designation indicated that the electronic medical record review (including the IBC scoring system assessment, if required) confirmed the participant\u0026rsquo;s self-reported IBC diagnosis. In contrast, records classified as discordant were those in which either a provider documented no formal diagnosis and the IBC scoring system did not meet the threshold indicating an IBC diagnosis or in which the physician adjudication disagreed with the self-reported status despite the scoring system results.\u003c/p\u003e\u003cp\u003eBefore conducting this study, we determined that the rate of concordant cases would need to be at least 90% to conclude that self-identification provided a sufficiently homogeneous population of patients with IBC. If the concordant diagnostic rate fell below the predetermined range of 80\u0026ndash;85%, self-reported diagnoses of IBC would be classified under the acceptability to ensure that patient self-report captures IBC diagnosis.\u003c/p\u003e\u003cp\u003eThe study was conducted under the standards of \"Good Clinical Practice\" (GCP) (ICH 1996), under the Declaration of Helsinki (World Medical Association 1996 and its amendments) and the current regulations. The study protocol was approved by the Institutional Review Board of Dana-Farber Cancer Institute (IRB#15-057b) as required by laws in force. Informed consent was obtained from all individuals included in the study as required by the Count Me In participation.\u003c/p\u003e\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e\u003ch2\u003eData Availability\u003c/h2\u003e\u003cp\u003eThe clinically annotated genomic dataset of the MBC Project is shared publicly in order for all researchers to be able to utilize this data to better understand metastatic breast cancer. De-identified data has been shared on a recurring basis as the data is generated. Data from The Metastatic Breast Cancer Project is available at cBioPortal with (N\u0026thinsp;=\u0026thinsp;379 tumor, 301 patients) (\u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://www.cbioportal.org/study/summary?id=brca_mbcproject_2022\u003c/span\u003e\u003cspan address=\"https://www.cbioportal.org/study/summary?id=brca_mbcproject_2022\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e), National Cancer Institute's Genomic Data Commons (\u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://portal.gdc.cancer.gov/projects/CMI-MBC\u003c/span\u003e\u003cspan address=\"https://portal.gdc.cancer.gov/projects/CMI-MBC\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e) and dbGaP (Study Accession phs001709). As of February 2025, the Genomic Data Commons and dbGaP data repositories have been updated with the genomic data for all the tumor samples collected for the MBC Project.\u003c/p\u003e\u003c/div\u003e"},{"header":"RESULTS","content":"\u003cp\u003eFrom January 2014 to February 2025, a total of 79 participants in the MBC Project self-identified as having IBC and had medical records available for review (reasons for exclusion are listed in Fig.\u0026nbsp;\u003cspan refid=\"Fig2\" class=\"InternalRef\"\u003e1\u003c/span\u003e). Patient demographic characteristics are represented in Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e. The median age was 47 years (range, 29\u0026ndash;65), with the majority of participants identifying as White (67/79, 84.8%). Representation from other racial and ethnic groups was limited, with a small number of participants identifying as Black (n\u0026thinsp;=\u0026thinsp;6), Hispanic (n\u0026thinsp;=\u0026thinsp;1), Asian (n\u0026thinsp;=\u0026thinsp;1), Native Hawaiian (n\u0026thinsp;=\u0026thinsp;1), Other (n\u0026thinsp;=\u0026thinsp;2), and unspecified race/ethnicity (n\u0026thinsp;=\u0026thinsp;1). Overall, 51/79 patients (64.6%) had documentation of an IBC diagnosis explicitly stated in their medical records by a healthcare provider. For the remaining 28 patients (35.4%) without chart-documented IBC, further assessment was performed using a validated IBC scoring system and physician adjudication. Among those, 6/28 (21.4%; 7.6% of total cohort) met diagnostic criteria for IBC through the IBC scoring system based on symptoms, signs, imaging and pathology reports extracted from the available records (Table\u0026nbsp;\u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e). For 16/28 patients (57.1%; 20.2% of the total cohort), there was no evidence supporting an IBC diagnosis based on the available documentation. In 6/28 patients (21.4%; 7.6% of the total cohort), a final diagnostic assessment could not be made due to a lack of medical records at the time of initial diagnosis (Fig.\u0026nbsp;\u003cspan refid=\"Fig4\" class=\"InternalRef\"\u003e2\u003c/span\u003e). Combining all confirmed diagnoses, either by documentation in provider notes or by the scoring system, 57/79 patients (72.2%; 95% CI 61\u0026ndash;82%) were classified as having a concordant IBC diagnosis. The concordance rate fell below the pre-specified 90% threshold required to consider self-reporting sufficiently reliable for identifying IBC cases.\u003c/p\u003e\u003cp\u003e\u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e\u003ccaption language=\"En\"\u003e\u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e\u003cdiv class=\"CaptionContent\"\u003e\u003cp\u003ePatients demographics\u003c/p\u003e\u003c/div\u003e\u003c/caption\u003e\u003ccolgroup cols=\"3\"\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e\u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e\u003cthead\u003e\u003ctr\u003e\u003cth align=\"left\" colname=\"c1\"\u003e\u003cp\u003eRace\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c2\"\u003e\u003cp\u003eNumber of patients\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c3\"\u003e\u003cp\u003eMedian Age\u003c/p\u003e\u003cp\u003e(Range)\u003c/p\u003e\u003c/th\u003e\u003c/tr\u003e\u003c/thead\u003e\u003ctbody\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eTotal\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e79\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e47 (29\u0026ndash;65)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eWhite\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e67\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e47 (29\u0026ndash;65)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eBlack\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e6\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e48 (41\u0026ndash;49)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eAsian\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e1\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e44\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eNative Hawaiian\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e1\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e43\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eOther\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e2\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e49 (39\u0026ndash;59)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eN/A\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e2\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e48 (30\u0026ndash;58)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003c/tbody\u003e\u003c/colgroup\u003e\u003c/table\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003e\u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab2\" border=\"1\"\u003e\u003ccaption language=\"En\"\u003e\u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e\u003cdiv class=\"CaptionContent\"\u003e\u003cp\u003eIBC Scoring System Calculation\u003c/p\u003e\u003c/div\u003e\u003c/caption\u003e\u003ccolgroup cols=\"5\"\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c5\" colnum=\"5\"\u003e\u003c/div\u003e\u003cthead\u003e\u003ctr\u003e\u003cth align=\"left\" colname=\"c1\"\u003e\u003cp\u003eKomen Score 1183\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/th\u003e\u003cth align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/th\u003e\u003cth align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/th\u003e\u003cth align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/th\u003e\u003c/tr\u003e\u003c/thead\u003e\u003ctbody\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eSymptom\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eScore\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003ePriority Factor\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eValue\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eConclusion\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eTiming\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e9\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eSkin changes\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e9\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eSwelling/enlargement\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e9\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eErythema\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e2\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eNipple Abnormalities\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e2\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eBreast Imaging\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e1\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003ePathology\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e2\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e30\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e\u003cb\u003estrong possibility of IBC\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eKomen Score 3636\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eSymptom\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eScore\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003ePriority Factor\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eValue\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eConclusion\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eTiming\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e9\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eSkin changes\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eSwelling/enlargement\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eErythema\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e2\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e6\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eNipple Abnormalities\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e2\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eBreast Imaging\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e1\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003ePathology\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e2\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e15\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e\u003cb\u003eweak possibility of IBC\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eKomen Score 6405\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eSymptom\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eScore\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003ePriority Factor\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eValue\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eConclusion\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eTiming\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e9\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eSkin changes\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e2\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e6\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eSwelling/enlargement\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e9\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eErythema\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e2\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e2\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e6\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eNipple Abnormalities\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e2\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eBreast Imaging\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e1\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003ePathology\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e2\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e30\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e\u003cb\u003estrong possibility of IBC\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eKomen Score 6788\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eSymptom\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eScore\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003ePriority Factor\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eValue\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eConclusion\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eTiming\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e9\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eSkin changes\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eSwelling/enlargement\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e9\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eErythema\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e2\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e2\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e4\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eNipple Abnormalities\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e2\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e6\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eBreast Imaging\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e1\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003ePathology\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e2\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e28\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e\u003cb\u003estrong possibility of IBC\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eKomen Score 7207\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eSymptom\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eScore\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003ePriority Factor\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eValue\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eConclusion\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eTiming\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e9\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eSkin changes\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eSwelling/enlargement\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e1\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eErythema\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e2\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e2\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e4\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eNipple Abnormalities\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e2\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eBreast Imaging\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e1\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003ePathology\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e2\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e16\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e\u003cb\u003eweak possibility of IBC\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003c/tbody\u003e\u003c/colgroup\u003e\u003c/table\u003e\u003c/div\u003e\u003c/p\u003e"},{"header":"DISCUSSION","content":"\u003cp\u003eIn this study, we observed a 72.2% concordance rate between self-reported IBC diagnoses and those confirmed through medical records or a validated IBC scoring system. While this rate demonstrates that patient-reported data can be very valuable, it remained below the pre-specified threshold of 90% which we considered to be optimally rigorous for research purposes, indicating a need for enhanced validation strategies when using registry data for IBC. These findings highlight that while self-reported diagnosis via CMI contributes to rapid cohort accrual, and using patient contribution facilitates access to research in rare breast cancer subtypes, reliance on self-identification alone can lead to misclassification. However, it is worth noting that in this cohort, 7.6% of self-reported IBC cases were unverifiable due to limited medical records. It\u0026rsquo;s interesting to note that recalculating the concordance, only accounting for patients with adequate medical records, and so excluding those with a lack of medical records, the concordance rate goes up to 78.1%, still being under the pre-determined threshold of acceptability. Given the complexities in accurately diagnosing IBC, the critical unmet need for universally accepted and standardized diagnostic criteria appears evident. This underscores the need for refined eligibility screening in future efforts, including incorporating symptom-specific questions (e.g., skin changes, symptom onset timing) to capture the disease characteristics. This might increase the identification rate of a rare condition and ensure the collection of accurate and reliable clinical information in optimal registry studies [\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e].\u003c/p\u003e\u003cp\u003eEnhanced patient participation in research facilitates detailed characterization of rare diseases, helping to define their natural history, optimize early diagnosis, and guide clinical decision-making. The CMI initiative exemplifies patient empowerment in research participation, providing a unique platform that overcomes geographical, institutional, and socioeconomic barriers by engaging patients directly online (\u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://joincountmein.org/\u003c/span\u003e\u003cspan address=\"https://joincountmein.org/\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e). These inclusive approaches (like CART-WHEEL.org, EURACAN, Orphanet) enable large-scale collection of valuable clinical, genomic, and patient-reported data, particularly impactful for rare cancers where traditional clinical trials are challenging due to limited patient numbers​ [\u003cspan additionalcitationids=\"CR16\" citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e]. However, despite these advantages, limitations inherent to patient-generated data, such as variable accuracy and understanding of clinical data reporting by patients, suggest using structured validation methods to reinforce data integrity​ [\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e].\u003c/p\u003e\u003cp\u003eIBC diagnosis often suffers from clinical ambiguity due to heterogeneous presentation and overlapping features with non-inflammatory locally advanced breast cancers. Unclear diagnostic features frequently contribute to misclassification, either under- or over-reporting IBC cases. Recently, a quantitative scoring system has been proposed as a step toward standardized diagnostic criteria for IBC, aiming to integrate clinical, pathological, and imaging features into a more objective framework [\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e]. This scoring system was developed by assigning numerical values based on specific characteristics, facilitating categorization and potentially reducing diagnostic variability​. A recent validation study tested the scoring system for diagnosing IBC using a photograph-rich dataset from nearly 1,000 IBC cases collected by specialized clinics. Results indicated that the scoring system accurately identified most IBC cases, demonstrating strong potential to reduce misdiagnoses. However, specificity was limited, suggesting room for improvement to reduce false positives [\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e].\u003c/p\u003e\u003cp\u003eA limitation of this study is that the analysis was limited to patients with metastatic IBC. This may have contributed to the observed discordance, as some patients may have presented with skin metastases rather than primary inflammatory skin changes typical of IBC.\u003c/p\u003e\u003cp\u003eAnother limitation concerns the accuracy and completeness of medical records. Although they represent the most reliable source of patient history in retrospective chart reviews, medical records may lack specific details relevant to the research question, introducing potential misclassification.\u003c/p\u003e\u003cp\u003eFuture studies should focus on stage III IBC patients to improve diagnostic accuracy and incorporate structured electronic case report forms (eCRFs), or at least registry questions specifically designed to capture all relevant clinical variables, ensuring comprehensive and reliable data collection.\u003c/p\u003e\u003cp\u003eTechnological efforts have also advanced to improve provider recognition of IBC symptoms. An accessible online tool (\u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://www.komen.org/ibc-calc\u003c/span\u003e\u003cspan address=\"https://www.komen.org/ibc-calc\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e) based on the validated scoring system was developed. This tool helps healthcare providers and patients collaboratively assess symptoms and make informed decisions about possible IBC diagnosis and subsequent management. Such educational initiatives aim to increase awareness of IBC among providers and patients, enabling earlier diagnosis and prompt treatment administration.\u003c/p\u003e"},{"header":"CONCLUSIONS","content":"\u003cp\u003eTo improve IBC identification, patient questionnaires in registry initiatives should include clear questions about specific symptoms, such as skin changes and the timing of symptom onset. Refining these questionnaires could help more accurately identify potential IBC cases earlier and reduce diagnostic uncertainty. Additionally, future registries may prioritize recruiting stage III IBC patients to enhance diagnostic accuracy due to better availability of clinical information and clearer documentation. The inclusion of advanced technological tools, like AI-assisted chart reviews or automated image analysis, could also greatly assist in reliably identifying IBC cases at a larger scale. These technologies could simplify the validation of diagnostic criteria and improve overall research efficiency. Finally, building cohorts of patients with confirmed and highly accurate diagnoses is crucial. Such high-confidence cohorts will significantly aid biomarker discovery, help design more effective clinical studies and generate reliable real-world data. These collective efforts might improve clinical management and lead to better outcomes for IBC patients.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003ch2\u003eAcknowledgments and Funding Information\u003c/h2\u003e\u003cp\u003ePietro De Placido performed this research as part of the research activities as a PNRR \u0026ldquo;Fit4MedRob\u0026rdquo; - RTD-A -Department of Advanced Biomedical Sciences.\u003c/p\u003e\u003c/p\u003e\u003ch2\u003eAuthor Contribution\u003c/h2\u003e\u003cp\u003eAll authors contributed to the study conception and design. Material preparation, data collection, and analysis were performed by Filipa Lynce, Elizabeth Troll, Meredith Regan, and Samuel Niman. The first draft of the manuscript was written by Pietro De Placido and Filipa Lynce and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.\u003c/p\u003e\u003ch2\u003eData Availability\u003c/h2\u003e\u003cp\u003eThe clinically annotated genomic dataset of the MBC Project is shared publicly in order for all researchers to be able to utilize this data to better understand metastatic breast cancer. De-identified data has been shared on a recurring basis as the data is generated. Data from The Metastatic Breast Cancer Project is available at cBioPortal with (N=379 tumor, 301 patients) (https://www.cbioportal.org/study/summary?id=brca_mbcproject_2022), National Cancer Institute's Genomic Data Commons (https://portal.gdc.cancer.gov/projects/CMI-MBC) and dbGaP (Study Accession phs001709). As of February 2025, the Genomic Data Commons and dbGaP data repositories have been updated with the genomic data for all the tumor samples collected for the MBC Project.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eAbraham HG, Xia Y, Mukherjee B, Merajver SD (2021) Incidence and survival of inflammatory breast cancer between 1973 and 2015 in the SEER database. Breast Cancer Res Treat 185:229\u0026ndash;238. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1007/s10549-020-05938-2\u003c/span\u003e\u003cspan address=\"10.1007/s10549-020-05938-2\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eHance KW, Anderson WF, Devesa SS, Young HA, Levine PH (2005) Trends in inflammatory breast carcinoma incidence and survival: the surveillance, epidemiology, and end results program at the National Cancer Institute. 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BMC Health Serv Res 25:182. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1186/s12913-025-12324-5\u003c/span\u003e\u003cspan address=\"10.1186/s12913-025-12324-5\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"breast-cancer-research-and-treatment","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"brea","sideBox":"Learn more about [Breast Cancer Research and Treatment](https://www.springer.com/journal/10549)","snPcode":"10549","submissionUrl":"https://submission.nature.com/new-submission/10549/3","title":"Breast Cancer Research and Treatment","twitterHandle":"","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"stoa","reportingPortfolio":"Springer Hybrid","inReviewEnabled":true,"inReviewRevisionsEnabled":false},"keywords":"Inflammatory Breast Cancer, Metastatic Breast Cancer, Registry Validation, Patient-reported Outcomes, Diagnostic Accuracy","lastPublishedDoi":"10.21203/rs.3.rs-7625939/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-7625939/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003ePurpose\u003c/h2\u003e\u003cp\u003eThis study assessed the accuracy of self-reported inflammatory breast cancer (IBC) diagnoses within the Count Me In (CMI) Metastatic Breast Cancer Project. Given IBC\u0026rsquo;s aggressive nature and diagnostic complexity, we aimed to evaluate the reliability of patient-reported data by quantifying concordance rates between self-reported and clinically confirmed diagnoses.\u003c/p\u003e\u003ch2\u003eMethods\u003c/h2\u003e\u003cp\u003eMedical records from 79 patients who self-identified as having IBC were reviewed to confirm the diagnosis through provider documentation. When explicit confirmation was absent, a recently validated quantitative IBC scoring system was applied. Each patient\u0026rsquo;s diagnosis was adjudicated by an expert physician, with cases classified as concordant or discordant based on predefined criteria. A concordance threshold of 90% was established to consider patient-reported diagnoses as sufficiently reliable.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e\u003cp\u003eAmong the 79 patients, 57/79 (72.2%) had concordant diagnoses based on either explicit documentation or scoring system verification. Specifically, 51/79 (64.6%) had explicit documentation, while an additional 6/79 (7.6%) met scoring system criteria. However, 22/79 (27.8%) were discordant, either lacking evidence or unable to be confirmed due to incomplete medical records, falling below the 90% concordance threshold required for reliability.\u003c/p\u003e\u003ch2\u003eConclusion\u003c/h2\u003e\u003cp\u003eAlthough patient self-reporting via the CMI initiative allows rapid data collection, reliance solely on self-identification for diagnosing IBC may lead to misclassification. Future strategies should incorporate refined symptom-specific screening and prioritize enrolling patients with stage III IBC. Advanced technologies such as AI-assisted medical record analysis could further enhance diagnostic accuracy and facilitate high-quality data collection for improved diagnosis and outcomes.\u003c/p\u003e","manuscriptTitle":"Assessing the Accuracy of Inflammatory Breast Cancer Self-Reported Diagnoses through the Metastatic Breast Cancer Project from the Count Me In Initiative Database","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-10-21 01:20:30","doi":"10.21203/rs.3.rs-7625939/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2025-11-08T23:49:55+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-10-20T19:30:03+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"220462131604658043495703802768935302715","date":"2025-10-09T14:51:40+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2025-10-07T04:02:25+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2025-09-16T11:57:27+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2025-09-16T11:56:52+00:00","index":"","fulltext":""},{"type":"submitted","content":"Breast Cancer Research and Treatment","date":"2025-09-16T04:56:13+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"breast-cancer-research-and-treatment","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"brea","sideBox":"Learn more about [Breast Cancer Research and Treatment](https://www.springer.com/journal/10549)","snPcode":"10549","submissionUrl":"https://submission.nature.com/new-submission/10549/3","title":"Breast Cancer Research and Treatment","twitterHandle":"","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"stoa","reportingPortfolio":"Springer Hybrid","inReviewEnabled":true,"inReviewRevisionsEnabled":false}}],"origin":"","ownerIdentity":"1799a093-8755-44df-9779-baf077a3cd1a","owner":[],"postedDate":"October 21st, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"published-in-journal","subjectAreas":[],"tags":[],"updatedAt":"2025-12-29T15:59:17+00:00","versionOfRecord":{"articleIdentity":"rs-7625939","link":"https://doi.org/10.1007/s10549-025-07876-3","journal":{"identity":"breast-cancer-research-and-treatment","isVorOnly":false,"title":"Breast Cancer Research and Treatment"},"publishedOn":"2025-12-24 15:56:58","publishedOnDateReadable":"December 24th, 2025"},"versionCreatedAt":"2025-10-21 01:20:30","video":"","vorDoi":"10.1007/s10549-025-07876-3","vorDoiUrl":"https://doi.org/10.1007/s10549-025-07876-3","workflowStages":[]},"version":"v1","identity":"rs-7625939","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-7625939","identity":"rs-7625939","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}